The Amyloidosis Speakers Bureau was thrilled to participate on Rare Disease Day! One way we were part of the celebration was for our patient educator Sean to share his journey at Keck Graduate Institute’s Rare Disease Awareness Fair.
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The Story Behind the Amyloidosis Speakers Bureau
The story behind the Amyloidosis Speakers Bureau (ASB) is very special. In this video we hear where the original concept of patients presenting to medical students came from — Dr. Gordon Huggins of Tufts University School of Medicine. Hear how he was “auditioning” his patients to speak to his class of second year cardiovascular medical students, and then he met Charolotte Raymond. It was an experience so meaningful it inspired Charolotte to conceptualize a program whereby patients would educate medical students across the country. She partnered with Mackenzie’s Mission in 2018, where together we took her original concept and collectively developed it into the Amyloidosis Speakers Bureau. The ASB was officially founded February 1, 2019.
Humanizing Medical Education: Beyond Bullet Points
The content of medical education is appropriately clinically centered. The delivery of this content remains relatively unchanged over the decades – typically taught by medical professionals through lectures, PowerPoint presentations, and patient case studies. We posit that there is an essential missing component: the patient voice. During the didactic years, medical students rarely hear from patients about their symptoms, diagnostic journey, emotional management, support and resources, and relationship with the medical community. By humanizing medical didactic education, patient insights can offer an impactful and durable education that complements traditional didactics, developing what we believe will be better and more empathetic future medical practitioners.
Research presented at NCA Conference!
Co-author Dr. Adebanke Adebayo presented our published research about the ASB at the 109th annual conference of the National Communication Association. She was a panelist for the “Health Communication Data Blitz: Patient-Provider Communication and Care” session.
Standing room only!
Reuniting three of the co-authors (left to right): Dr. Kathy Rowan, Dr. Adebanke Adebayo, and Deb Boedicker.
Click on the title below to read more about our research and find a link to the PubMed peer-reviewed paper.
https://mm713.org/blog/published-research-evaluating-the-amyloidosis-speakers-bureau/
ASB Presents to 1st Physician Assistant School!
While our primary focus at the Amyloidosis Speakers Bureau (ASB) is on medical school students and internal medicine residents, we are very open to presenting to other groups that are aligned with our objective of closing the education gap within the medical community.
In early 2023, a Tufts University School of Medicine student in the PA program learned of our upcoming May presentation to the medical students. Conversations ensued with the medical school course director, PA program director, and Mackenzie’s Mission regarding the possibility of the PA school class joining the medical school class for the ASB presentation. Success!
So in May 2023, the ASB presented to 200 Tufts University School of Medicine medical students and 50 physician assistant students!
The experience and feedback from the PA students to their program director was so positive that all have agreed to make this an annual event within their curriculum!
ASB presented at NORD’s Students for Rare Summit
On October 15, 2023 ASB patient educator Sean (accompanied by caregiver/wife Robin) shared his journey with hereditary ATTR amyloidosis at the NORD Students for Rare Summit in Washington DC. These student leaders from medical schools across the U.S. had the special opportunity to learn about hereditary amyloidosis and the patient experience through Sean’s story.
ASB Launches “Expert Insights Into Amyloidosis” video series
The Amyloidosis Speakers Bureau (ASB) is an initiative sponsored by Mackenzie’s Mission to close the medical education gap about this disease. The core of this initiative is a live presentation, where patient educators share their personal journey with amyloidosis — from symptoms, through diagnosis, treatment, and life today battling this rare and incurable disease. Following each presentation the attendees are invited to receive ongoing information about the many facets of the disease. We are pleased that many have accepted.
To expand the body of information sent to those interested, earlier in 2023 we designed a new series of short videos recorded by our ASB advisors, the vast majority of whom are practicing physicians. The topics are varied, discussing symptoms, diagnosis, treatments, clinical trials, multidisciplinary care teams, and racial/ethnic inequities of both AL and ATTR (hereditary and wild-type).
In our Education Hub you can select to view all of our Expert Insights, and be sure to sign up for our newsletter to stay abreast of future releases.
This series offers an extraordinary education opportunity for the medical community, and we believe the patient community will also find this series valuable.
Here’s a LINK to the website page.
Enjoy!
